Challenges include more than just walking

Catherine Lutz – Aspen Daily News Staff Writer

The Challenge Aspen co-founder, a paraplegic for 15 years, signed a contract on Monday with an agent to promote her forthcoming biographical book, accepted a leadership award from the Colorado Rockies Charity Fund in Denver on Wednesday, and is trying to get her blog up and running this week. On top of all that, she’s trying to squeeze in one to two hours of physical therapy per day.

Boxtel recently underwent two months of human embryonic stem-cell treatment in India and for the first time in 15 years has some sensation in her legs, she states proudly, which are now “warm pink meat instead of cold white flabby legs.”

But as the first American to ever have received that kind of stem-cell treatment — it’s illegal in the United States — Boxtel is finding that trying to walk again is only one part of her new existence.

“It’s a full-time job,” she said of her rather chaotic life that’s so tied to her injury. “I didn’t know what to expect coming home from India but I’ve been inundated. The whole stem-cell therapy treatment has put my life in a whole new direction.”

Boxtel gets “a few to several” phone calls and e-mails every day, from people all around the world curious about her experience. And because she has become so passionate about the treatment she’s received, she spends one-half hour to an hour on the phone with them, she estimates.

Hence the blog. Friends and family wanted to follow her progress every step of the way while she was in India, and now that she’s back are curious to hear more. Boxtel posted a few blogs on Aspen Post, but wants to have a regular blog on her own Web site, amandaboxtel.com, along with background information on the embryonic stem-cell therapy she received and the Indian doctor who pioneered it, Dr. Geeta Shroff.

Touting the treatment “is my purpose now, it’s become clear to me,” she said. “I had the opportunity to pursue this, and (for others) it’s not about just motivating, it’s a lot more. If I can speak in Congress I’ll do that. If I can get embryonic stem-cell therapy into this country at an affordable cost …”

Human embryonic stem-cell treatment has been used to treat a number of disorders, including terminal ones, as well as people like Boxtel who were seriously injured. Dr. Shroff is the only person in the world conducting such treatment, and due to her success rate is spoken about with almost godlike reverence.

Having developed one embryo in a lab from which she created multiple stem cell lines, “she said she has enough stem cells to cure all of humanity,” Boxtel said with a degree of awe in her voice. “This is life giving life.”

Perhaps because it’s so mind-boggling, the stem-cell treatment will likely be the hook of Boxtel’s book, which doesn’t yet have a publish date. Boxtel has been working on the book for a while, without an agent, but it was at the Maui Writers Conference — which she went to just one week after coming home from India — that she finally secured one. And though she understands why the stem-cell treatment has to be the hook, for her it’s the final part of the circle.

THE BOOK
The first part of the book will chronicle the period of time between the accident and a very physically active woman coming to terms with the idea that she will never walk again. In the second part, she talks about how once she’s accepted her paralysis, what she is going to do with that.

Aside from co-founding Challenge Aspen, a local nonprofit that provides recreational opportunities for people with disabilities, Boxtel has helped set up similar programs around the world. She left Challenge Aspen a few years ago to become a professional speaker and coach.

“I speak to people about change and embracing adversity, not being the victim and not reaching for this false hope,” she said. “I had to accept this paralysis, but I yearned to walk. But it kept me from living, and when I accepted that I don’t know what’s going to happen a year from now, that allowed me the freedom to just live. It allowed me to be happy.”

Boxtel’s outreach efforts clearly had an impact on others, as she was nominated for and unanimously voted on as the recipient of this year’s leadership award at the Hal O’Leary Awards dinner, put on for the past 13 years by the Colorado Rockies Charity Fund. The awards honor distinguished disabled athletes who make a difference in the lives of others, and Boxtel has certainly earned the recognition, said Jim Kellogg vice-president of community and retail operations for the Rockies.

“Her efforts are building her legacy, not just a resume,” said Kellogg. “She’s not just good for something she’s god for somebody else and that’s the type of person we want honored.”

SETTING PRIORITIES
All that aside, Boxtel is eager to focus on her own body and the possibilities raised by her treatment in India. During the two-month treatment, she received regular injections of stem cells — with each syringe holding up to 50 million of them — into her spinal cord. Because the stem cells were stored at temperatures well before freezing, they had to be warmed up and would only reach room temperature in the body. Boxtel said she felt the product coursing through her body, and “every week, something would come alive” — pressure in her right leg, a tingle down to her toes, the ability to flex a hamstring. And for the first time in 15 years, she has some control over her bladder and bowels.

But embryonic stem cells, like human embryos, need to take the time to grow into their full capacity, so it will be some nine months before the ones currently in her body have completed their job.

While that’s happening, physical therapy is key, said Boxtel, although she has to create her program and execute it on her own since she doesn’t have a doctor-recommended plan — nor does she have insurance.

“Now that I’m home I have to really step up to the table — it’s 90 percent Amanda and 10 percent the stem cells doing their job,” she said. “I’m like a pregnant woman; this is not a miracle cure. But I am going to continue to see improvements.”

Even if Boxtel weren’t so busy herself, finding people to help her with her therapy would still be a challenge. She has yet to find a physical therapist who will work with her long-term at reduced rates (she can’t afford to pay someone going rates one to two hours every day), and the friends who are willing to help her often have their own busy lives.

Ideally, she’d like to do one hour of standing, on top of an hour of physical therapy exercises, mostly with her legs. She’s set up parallel bars in her home as well as other exercise equipment.

“My muscles are there, they’ve come back, but I have to keep them alive,” she said.

Oh, and there’s one more thing: Boxtel is trying to raise money to go back to India for further treatments — a requirement of the program, she said. She hopes to return in December for a two- to three-week period of injections and intense therapy, as half the stem cells that are injected are expected to die off. After that she will likely return for four to six additional treatments. Her first two-month stint cost $30,000, much of which she raised through the local community; considering airfare for herself and a caregiver and all the other extras, the treatments are a huge strain on her budget. Yet she’s scheduling limited speaking engagements for the next couple years because she’s prioritizing her treatments, and hoping the book will take off enough to cover her costs.

Despite all the challenges, Boxtel remains optimistic, perhaps more so than she’s ever been.

“I really find my life is going in a new direction,” she said. “Now that my body is coming alive, hope is in my vocabulary again. If I have opportunity to stand up again I’m going to do everything I can.”

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My History, My Story

On February 27, 1992 at the age of 24 I sustained a complete spinal cord injury at T11/12 (that is, no feeling or sensation at thoracic vertebra 11 & 12). I am able to recall the accident vividly in my mind's eye to this very day. I was downhill skiing. Everything happened in slow motion. A freak somersault and in a split second I shattered four vertebrae. It was as though somebody turned off a light switch. An electric current zapped through my legs and in an instant there was nothing.

15 1/2 Years with No Changes…

I have always been an active woman. For 15 1/2 years I sort out various alternative healing therapies yet I showed no improvement. Early on I tried standing tall in leg braces, but my efforts proved fruitless, plus I had a couple of horrible falls. Sitting simply became more functional. In August 2000 I was the recipient of the Vocare Bladder Implant, which helped me void my bladder using electrical stimulation. For 15 1/2 years I kept my legs supple and alive with various alternative healing therapies, yet I showed no improvement. I was paralyzed with no sensation or movement from the top of my pubic bone down. While I arrived at a place of acceptance with my paralysis, I have always had an uncanny insight that one magical day my legs would support me. Secretly, I never gave up hope.

HOPE Restored!

While my spinal cord injury took away my ability to walk, it didn't take away my ability to dream. TODAY I am turning my dream into my reality one baby step at a time.
On June 25, 2007 I was the first US Citizen to undergo Human Embryonic Stem Cell (hESC) Therapy with Dr. Geeta Shroff in Delhi, India.
During my initial two month visit, I not only witnessed astounding improvements in my own body, but with many patients who have life restored within their bodies and a newfound reason to not give up but LIVE!

New Sensations, New Muscle Power–I Am Defying the Odds!

I am compelled to share my experiences with the world. Since my first stem cell treatment in 2007, and after 15 1/2 years of being in a wheelchair I now have increased sensation with light touch and with deep sensation tingling all the way to my toes; my bladder and bowels are beginning to function again; and I have increased muscle power in my legs including gluteal muscles, quadriceps, hamstrings, adductors and abductors, and a flicker in my calf muscles too. Hope is now a part of my vocabulary!